Caring for the community: Sue Ryder Leckhampton Court Hospice

None of us wants to think about having to use a hospice. But those who do are passionate advocates of these vital services. Katie Jarvis spoke to three people who have been helped by Sue Ryder Leckhampton Court Hospice.

Clare Young is from Gloucester. Her husband, Ken, was cared for by the hospice, both as a day visitor and, at the end of his life, as an inpatient

Ken and I met through internet dating in 2004, which is strange because it’s something I would never normally have done. I had four small children, and I’d brought them up on my own for years. But something made us both join this dating agency.

My daughter, Polly, was looking over my shoulder at Ken’s profile and said, “Oh, he looks nice!” Ken lived in Cardiff – a fair distance away; had a tattoo on his arm, and he said he was a social smoker. I’ve never smoked in my life. So he didn’t tick any box.

We met at a pub in Chepstow for our first date. And, categorically, it was love at first sight for me. Pit of the stomach stuff. He was incredibly nervous: had to keep popping out for a smoke; couldn’t eat his lunch. He tried to put his arm round me in the pub and I shouted, “Not in here!”, which is something we laughed about afterwards.

Ken was a fruit and veg wholesaler – ran his own company in Cardiff fruit market. His two daughters were in Cardiff, and my children were at school here, so we had a long-distance relationship. He’d arrive Saturday afternoon and leave at 2am on Monday, and we’d speak three times every day on the phone. That all changed after the diagnosis, and we married in April 2014 - a wonderful ceremony, surrounded by our families - and Ken moved to Gloucester to live with me.

He was a protector – that was the thing I loved about him. Very caring. Good sense of fun. When he became ill, our roles reversed. On diagnosis day, I decided I was going to do my very best to protect him, and be his advocate in any appointments and difficult discussions on end-of-life care. I passionately feel that all families should discuss their end-of-life wishes with each other, however difficult it might be.

I was so scared when we first came to the hospice for a blood-transfusion. As we turned into the drive, it felt like the last leg of our journey. How very wrong I was. As we walked through the door, it suddenly felt as if I wasn’t doing everything on my own anymore; I didn’t need to explain anything. People here understood. And Ken couldn’t stop smiling. He said, at one point, ‘They’ve given me lunch!’ It was only a cheese salad sandwich – such a simple thing - but we just weren’t used to it.

When Beccy [Day, the nurse] suggested Ken could come regularly to the day hospice, he was very reluctant – most people would be at only 47. But I encouraged him - and out of that came this amazing artwork. He’d done pottery at school; and he’d started to do a bit of art at home when he couldn’t sleep because of the chemo. He always dismissed anything he did at home as rubbish. I don’t know what happened here to tap into it more but his work became quite remarkable. I call his pictures my Kenoirs. They’re all over my lounge now, and they give me such comfort. And they gave him a purpose. When you’re a man who had worked six days a week, 12 hours a day since the age of 15 - a provider; a bit of a caveman - you need a focus.

Clare and Ken Young

When Ken was finally admitted [as an inpatient to the hospice], he was in a lot of pain. He’d always denied being in pain before because – in his mind – he was never, ever going to die. But Dr Paul Perkins [Sue Ryder’s palliative medicine consultant] and all the incredible nurses and doctors got him pain-free for the first time in 22 months - Paul is the most amazing man on this planet, often ringing me at weekends to check how we were coping. And for me, the wonderful thing was being able to hand Ken’s drugs over and just be his wife again.

One of the nurses from here came to Ken’s funeral in Cardiff, and so did Rob, the hospice chaplain, who officiated. How amazing is that? I had two people there who understood.

I don’t do anger; I don’t cry. That will come. I have bereavement counselling here every three weeks. I’d live here, if I could. To me, the hospice is the best place in the world – and it’s not just the surroundings; it’s the people. Ken was the happiest he’d been here, since diagnosis. I always look up at the window where his bedroom was; and I know, on the anniversary of his death, I will come and sit in the garden.

I found a jar with a spotty lid – I thought that was funny because Ken hated me wearing spots – and I’ve labelled it ‘Kenny’s Happy Memories’. I put something in every time I think of a moment - like, we would go to Sainsbury’s and he would kiss me as we walked down an aisle. I’m not sure whether I will open it on his anniversary in August; or on the date when we started the jar. We’ll see – but it gives me something to look forward to. It’s full of things I never want to forget.

• On October 22-24, an art exhibition, Art Affirming Life, takes place at Thirlestaine House, Cheltenham College, in support of Sue Ryder Leckhampton Court Hospice, sponsored by Cotswold Cheltenham: www.artaffirminglife.org

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Julia Willets, 65, lives in Cheltenham. She has multiple sclerosis and recently completed the 12-week, one-day-a-week, hospice programme for people with life-limiting conditions.

I belong to a Sambista band and one of the other players - a volunteer at the hospice - suggested I apply for this 12-week course. My initial reaction was: That’s not really for me! When you think of day-hospital, you picture people sitting around in armchairs; but she kept nagging me, which was good. In the end, I thought: I have nothing to lose. I might have something to gain. So I self-referred.

The first day, I thought: What on earth am I going to do from 10am until 3pm? But you soon get into it. You’re immediately offered tea or coffee, and they take your lunch order. Then they might have a quiz or you could go into the art-therapy room. The physio or OT [occupational therapist] might want to see you, or the counsellor offer to talk. But if you say, ‘No, thank you’, you don’t feel awkward. In fact, I noticed that some people just wanted to pick up a book and read, and they were left to do that. Personally, I started to call it my spa day! I’ve always loved going to spas and I’ve always enjoyed massages and manicures, and that’s the kind of thing you’re offered here. It’s pure pampering.

When I told friends and family that I was doing a course at the hospice, I had some explaining to do. People – myself included – tended to think hospice meant ‘end-of-life care’. So then I had to say that, no: they also support people with long-term incurable conditions.

During my life, I’ve travelled quite a lot – lived abroad in Sierra Leone, Kuwait, Oman, Azerbaijan, Georgia and Abu Dhabi. My favourite was Abu Dhabi because we were there before it became well known, when there was more culture, and more green space. It does make me think, though, how awful it would be to have a condition like MS in some of those poorer countries. You come to England and realise how well looked after you are. Even so, I’m amazed at how many people locally didn’t know about the hospice day-programme – including my MS nurse specialist at Gloucester Royal. So I wrote an article about it for my MS Society branch newsletter. And then the hospice asked if they could put it on their website. I was so pleased when I met a lady here who only found out about it through my article.

Of course, we’re here because we’ve all got a long-term incurable condition. But we don’t come to have aggressive treatment. A hospice day is all about pampering; a day when we come to make the best of what we are.

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Fiona Hudman is from Tewkesbury, Her husband, Steve, was cared for by the Hospice at Home team in 2010.

Steve was a very, very special person. We both loved golf and he used to caddy for me at county matches. There was never jealousy on his part about anything I achieved - he was always very proud of me; so supportive.

One of my happiest memories is of playing at Edgbaston in a Peugeot pairs competition. Together, we won one of the places that took us up to Gleneagles for the next stage, which was amazing. As we went into dinner in the evening, they piped us in – which sent shivers went down my spine! We didn’t win anything as a pair, but I got the ladies’ best score - and that took us on to Paris.

Steve loved the sun, and we had a place in Almeria, Spain. We’d just signed to buy a bigger place when they diagnosed Steve with pancreatic cancer. The day they told him that there was nothing else they could do for him, Steve said, ‘I want to go to Spain’. The staff at Cheltenham Hospital said, ‘We can arrange that’. And then – later that same day - he had a stroke. Just out of the blue.

They said he had three months and it was three months. They gave us a 50 percent chance that, if Steve had some chemo, it would buy us more time. Steve said, ‘Yes, let’s go for it’. He was fighting for both of us; but he had four or five treatments before they discovered that it was already in his lungs and liver. Just racing away.

He had three strokes altogether, and the last one took his speech. That was the hardest because we couldn’t talk to each other very well. It was cruel.

It’s very hard to talk about, but I’ll do anything to tell people about the incredible care arranged for us by Sue Ryder Hospice at Home. Steve and I decided he should be cared for in his own home, surrounded by familiar things; it meant we could be together in the short time we had. Our dining room – a very sunny room – was turned into Steve’s room, and we were given all we needed: the bed; the commode. It also meant it was easy for his sister, Sue, and her husband, Tony, to see him. Steve and Sue were both adopted, separately, but they were very close. Sue is still my absolute rock.

I remember meeting a Hospice at Home carer for the first time and feeling very apprehensive. I had been looking after all Steve’s personal care, and I was just starting to get him washed when this carer arrived. She went in to have a chat with Steve and asked him if he would mind if she took over while I had a bath and a bit of a break. I’ll never forget how well she did it. Steve was 51 at the time. To let a stranger come in and attend to him on a personal level takes such care and skill. All the trained nurses showed these special qualities. They gave me the strength to be with Steve. I can’t thank them all enough.

We lost Steve on the 30th of the eighth. He had just passed away when a male nurse came. He was so kind and gentle and asked if I would like him to wash Steve and put some favourite clothes on him and some aftershave. It was such a warm thing to be asked. He told me that Steve would be able to stay overnight until the next day, and I strongly believe this has helped with my grieving process.

Steve worked for Rawplug for years and was very well thought of. Business today is so competitive – not like it used to be, where everything was done with a handshake. Yet when I lost him, I had wonderful cards, and the words they said about him in business were just lovely.

Through the loss of Steve, I hope we can bring positives to keep this incredible care going. I hold a Steve Hudman golf day, which is now in its sixth year: in our first year we raised £500 for Sue Ryder Hospice at Home; last year, we raised £2,155. I’m so grateful for everyone’s support. I don’t want Steve forgotten. I want people to remember his great zest for life; I want them to have fun on a golf day; but also we raise money to help other people who might find themselves in our situation.

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